Waiting for an operation

Parents whose child is having heart surgery for the first time can be very frightened. Several said they were scared that their child might die and many were apprehensive about what the operation would be like.

Diagnosed at one week old. Parents' marital status: married. Occupation: Mother-Nursery Nurse, Father-Engineer. Other children: a twin sister. The family live close by to a specialist hospital.

Mother' Our appointment came through, fantastic, and then 'Ooh, it's such and such a time, April 3rd'. And then working up to it. In the holidays we could tell very few people go in, I work in a school so what I had to do was leave school, holidays, dealt with it, go back, nobody would know. Because I couldn't talk about it to everybody, I just [Father' Yeah] was too frightened.

Father' I couldn't talk to anyone about it. Not even [my wife], I didn't want to talk to [my wife] about it.

Mother' Because I'm naturally inquisitive.

Father' Yeah. Every time [my wife] brought it up I just sneaked back into my shell I guess and I couldn't handle it all, not at all.

That was the way you coped with it?

Father' Yeah. I just had to. I couldn't even, I didn't even think about it to be honest. I tried as much as possible to just keep it out of my mind [Mother' Hmm] and not think about it because every time I did start thinking about it I started panicking and thought 'He's going to die'.

Mother' Because we didn't know...

Father' And to be honest, with me [Mother' anything about it] it didn't really matter what anybody said. And possibly the only way I might have felt a bit better was actually to hear somebody else who'd been through it. Because I mean the doctors, they said 'Yeah, it's, it's not that difficult. It's fairly basic' but I didn't really want to believe any of it.

And you hear of operations going on all the time and major heart surgeries and people come out, no worries. So I think after a while we sort of calmed down, put it into perspective and we were thinking 'We've got our date, we're working up to it'.

And how were you feeling at that time when they told you he needed an operation?

Mother' Frightened. Really, really frightened. He's my little boy, [Father' Yeah] he's going to die. And you told me it wasn't going to happen, he wouldn't need it, he was fine, so angry as well. And immediately, I'm a born organiser and, I needed to get everything sorted out and straight and we had to go on our holiday and the children had to do this and what would happen to, to our daughter because she was a twin and our whole lives would be turned upside down and I was on the ceiling.

And it's something that I could not plan, I could not organise and I had to let somebody else do it for me. Totally, and then, one, few words, turned my life upside down. And I didn't, it wasn't really until I got into the hospital and saw other things going on that I realised that, put it into perspective. Important as it was, we were going to be all right because we had a family around us and loads, loads of friends who 'We can have this one, we can do that, we can.' But I was frightened and I was angry and scared. I thought he was going to die, because it's an operation. And I do think of, albeit it being a heart operation, if I was told that he'd have to have has appendix out or if my little girl would have to have something done, just as frightened because it's an operation, it's an operation.

One couple waiting for an operation date had been helped by seeing other children at hospital appointments who had already had surgery. One father explains that they were afraid before their baby had his operation, but waiting two months for surgery gave them the strength to accept that it had to be done.

Baby's age at Interview: 9 months. Diagnosed at 3 months old. Parents' marital status: married. Occupation: Mother-Full time mum, Father-Information Technology. Other children: one older child. The family do not live close by to a specialist hospital.

Actually, before this, what, the strategy that they adopted, that the doctors adopted with Vikram was, they didn't want to operate on him just yet at that point. When he was diagnosed, he was 3 months old so his heart was not strong enough for an operation like that. On the other hand, the hole was large enough to demand an operation. So they were trying to balance these two; as to the need for an operation and the ability of the heart to cope. So what they said was that each month we will review Vikram to see if we can postpone this operation one more month. At any point if we felt that he needed to be operated on immediately, we would do it then. We liked the idea, we said 'yes, that's good enough'. That made sense really, because on the one side the logic of it all suggested that if yes his heart is not strong enough to withstand an operation like that and more than that we were afraid. We didn't want the operation, we didn't want the operation, we wanted the operation so he would well, better but we didn't want the operation because we were afraid. We were afraid that, we were just afraid, we didn't want it.

What was an issue also was that Vikram was generally well, in fact he was called 'the smiley baby' because he was always smiling. In himself he was fine, except that he had this problem which had to be corrected. And were, were also, these two months from the time he was diagnosed to the point when he was actually operated, that gave us the quiet strength really to accept the fact that yes, he has to be operated and it is for his good. Nothing was going to happen to him, he'll be fine. Although we had some fear but logically looking at it, it was for his good, he needs it. We would only be doing him wrong by not getting him operated or by delaying it when we didn't need to. I mean, if we didn't need to.

Several children were well while they were waiting for their operation. Parents had mixed feelings - wanting their child's operation done and not wanting it to happen.

Diagnosed during pregnancy (22 weeks). Parents' marital status: single. Occupation: Mother-Full time Mum. Other children: twin brother and one older child. The family live close by to a specialist hospital.

And as I say you have regular checkups, well he's got to have another operation, but at the moment we don't know when. It's a question, it's a waiting game to see how he is and it's a question of catching him before he becomes too poorly, but waiting as long as possible 'til he's as big as possible. And that's quite hard as well. Sometimes I think I want him to have the operation. I want it to be over and done with, and then other days, I think, oh, no, let's wait as long as possible, let's put it off, put it off. So it, that's quite difficult, again.

Yes, so sometimes you just think, let's get it all out of the way, because it's sort of looming over you all the time. I have evenings sometimes when I sit down and it comes into your mind and you can't get it out of your mind, and you're thinking, oh what you've got to go through, the worry that you're going to go through, and you have visions of that walk into, taking him to theatre and handing him over and also now because he's that much older, I think the next operation will be the worst because he's going to be far more aware, last time he was just a baby. He didn't have a clue what was happening, so there was no sort of stress for him, if you like.

But this time, he is going to be aware and he's going to know what's going on, and I'm going to have to explain to him and he's going to be a lot more frightened. And as I say, sometimes you just think, oh, well, let's please, you almost hope sometimes when you go for a check up that they're going to say, 'I think now's the time.' And then on the other hand, the other side of you just saying, 'oh, but if we put it, lets put it off, put it off, put it off, you know, so, it is quite hard that's one thing that sort of plays with on your mind a lot.

To one couple it felt like a shadow hanging over them until the operation took place. Another felt they were living in limbo - they had not been able to plan anything. One couple said that their child's future operation was always at the back of their mind, but they tried not to dwell on it.

Baby's age at interview: 3.5 years. Diagnosed during pregnancy (24 weeks). Parents' marital status: married. Occupation: Mother-Doctor, Father-Doctor. Other children: one older child. The family live close by to a specialist hospital.

I mean obviously there was around the time of the operation we felt we couldn't plan. Leading up to it we didn't know when it was going to be, it kept being cancelled and we felt you couldn't plan things and I, certainly, work-wise I took on different, I mean I worked a lot less and didn't take on work because I wasn't sure about what was going to happen.

Looking back it seems a very short time really all of that. But at the time it seemed a really long time and at the time each month that you're waiting seems ages. And she was well. I mean we were lucky, she was a well child who was waiting for it. It's just that we felt we couldn't really get on with our lives and things until we'd done it because it was such a big thing. And she might die or she might have a really bad complication so how can you plan anything until you know that that's been done. But for children who are actually ill and suffering that must be so hard.

Another mother had felt upset giving her daughter a bath in the days leading up to her operation because she knew her chest would never look the same again.

Some children had had several operations. Parents said that every time their child had an operation they had the same feelings and were frightened that their child might die. Parents of a child who had surgery as a newborn describe their feelings when their daughter was waiting for her second operation.

Baby's ago at interview: 15 months. Diagnosed during pregnancy (20 weeks). Parents' marital status: married. Occupation: Mother-Full time Mum, Father-Postman. Other children: one older child. The family live close by to a specialist hospital.

Mother' Well I suppose they was the other side of surgery which we wanted her to go in and have it done, but we didn't, if that makes sense, we knew that obviously she was at risk again and it's such a big operation, but now sort of looking back, it's a shame she couldn't have had it sooner. Because she seemed to be so much better -I mean, not sort of development wise or anything, but, you could see her colour, she was getting greyer and bluer, her fingers, her nose, her lips and her feet,

Father' I think you just sort of you just sit down and you chat and you sort of talk it through with each other and I think the fact that she'd been through surgery once and come through it and this time she's slightly older, and a little bit bigger, slightly stronger, I think you feel as though the chances are a lot better, and they did tell us the first one, the first surgery was sort of probably more difficult because of her being 22 hours old and the heart being so small. I think you find, you sort of look, you'll look for anything to sort of help you through it, but I think the fact that she'd been there done it come through the other end sort of helps you yourself, and actually seeing your child well, well as can be and doing things that children do, sort of you say well you know she's looking strong, she can do this. I think it's just about having a bit of faith in the people who are doing it. You know just, and in your own daughter pulling through. You'll grasp anything to be honest.

One mother said that it was easier the second time her son had surgery because they knew what to expect and were prepared for possible setbacks.

Parents said that it was hard to give consent to an operation when their child was happy and healthy, but they had focused on the long-term benefits of their child's operation.

Baby's age at interview: 3.5 years. Diagnosed during pregnancy (24 weeks). Parents' marital status: married. Occupation: Mother-Doctor, Father-Doctor. Other children: one older child. The family live close by to a specialist hospital.

But I think it was third attempt we did go in and they found a bed for us and we went in and were prepared for her operation. So I think at that point she was 18 months and it was quite hard. It was quite hard for the family. We were terrified about the complications from it. We knew that there was a risk, a small risk but a risk of mortality with it, of her dying. And also a risk of things like stroke, of her having. So it's a hard thing to put your child who is actually very well, beautiful, lovely 18 month old little girl who's chatting away and very much part of your family, put her into something that you know is for her own good and that she'll have significant problems all her life if you don't. But it's a very, very difficult thing to do.

Some parents had very short notice of their child's operation. One couple had a phone call from the hospital on a Friday asking if they could come to the hospital the next day for their child's operation on the Monday.

When operation dates came at short notice, parents were busy making practical arrangements and they said they did not have time to worry. One mother who had been given a date in advance said she found the slow build up to the operation agonising.

Sometimes operations need to be cancelled at the last minute because of a shortage of intensive care beds, an emergency admission of a newborn baby, or the operation of the child before them takes longer than expected. Parents found this very distressing, especially when it happened three or four times. One couple remarked that although it had been extremely distressing and difficult to cope with at the time, in hindsight they realised that their child's place had to be given to a more urgent case.

Mother' Unfortunately what happened to us is that the operation got cancelled three times.

Father' We were sent home, we were.

Mother' That was'[Father' Yeah, we were] Out of everything that was just [Father' Even] the worst.

Father' Even, we'd had pre-med [Mother' Yeah] you know. And he, he was really sort of lethargic, lying in the bed half asleep and they come and say 'Sorry it's cancelled'. You know.

Mother' We'd, we'd had and my sister-in-law had come down from Cambridge to look after our other boy. So she'd made that journey. I'd, because I teach, I'd arranged cover for all my lessons. My boss had, you know, hired a stand-in teacher for all the lessons and we got up to the hospital, we settled in, we slept the night, he had his pre-med and then that was it, no, you've got to go home again.

And, was the next, did we go up again or did they cancel on the phone for the next few times? I can't remember.

Father' No, we, we did go up again.

Mother' So we did the same thing like the next Monday and you'd spend, I think the weekends were the worst, weren't they? [Father' Hmm] 'Cos you kind of like got through the week and then you knew he had to be admitted on the Monday or he was hopefully going to be admitted on the Monday and you'd get a letter - wouldn't you? - Saying 'Please come on Monday, blah, blah, blah'. [Father' Hmm] Wouldn't you? 'Please phone on Sunday to see if there's a bed'. So you'd sort of spend all day Sunday worrying [Father' Hmm] you know and it was 'Ohhh'.

Father' You would have a sleepless Sunday night because you were, you knew what was going to happen. But it, it was, it, three, it was three times - wasn't it? - it was cancelled.

Mother' And you'd phone up and they'd, or you'd be, I mean I can remember when one time we'd gone up there and we'd slept overnight and hadn't, we hadn't slept at all 'cos he'd been awake hadn't he through the night or whatever and I'd fallen asleep in the chair next to his bed. But you were awake and the, the surgeon or whoever came round and said 'We've cancelled it'. And I was just laying there, I was in the chair asleep - wasn't I? - And I was just, when I woke up and you told me I just [Father' We're going home...], you don't know whether to burst into tears or to be really angry and you sort of felt both and you know, also when you travel to and from on the train you sort of look to everyone else just getting on with normal lives and there were you taking your son to, you know, to have his heart operated on and that was the time with all the train strikes as well, wasn't it? [Father' Yeah] We stood on Victoria Station once with, you know, a 6 month baby and a 3 year old boy, you know, waiting for a train and...

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Age at interview: 16 months. Diagnosed at 3 weeks old. Parents' marital status: married. Other children: one older child. The family live close by to a specialist hospital.

Mother' It was cancelled four times actually, which was very, very distressing.

Father' Extremely traumatic but I think that when you come out and look at the situation you realise that the first operation that she had, would have cancelled somebody's else operations probably.

Mother' If it hadn't been happening Christmas day because it was an emergency

Father' And you learned to understand that emergencies come first and although it's extremely traumatic and you build yourself up to prepare the whole family for the operation.

Mother' You do. It's such a build up because the first one is suppose to be in the May and of course you pack the bags and you arrange where your son's going to be. You take time of work. You prepare yourself mentally. [Father' Hmmm] I found myself, I couldn't stop myself looking at her and thinking that her chest was never going to look the same and I, I found it upsetting to give her a bath in the days beforehand because I thought she was never going to look the same as this again. I was just very nervous about it. And obviously the first operation you have a chance to think about she's going to be operated 'because one minute they told you, the next minute she in. This you got slow build up which is, which was agonising and then we took her in and she stayed overnight and of course you have to starve them so they can have the general anaesthetic and he came over and said 'she's got high white blood cell count, she's got a cold we can't do it.

Father' Yep

Mother' And we were just, we thought we were ready for anything and we weren't ready for that. [Father' No] It was horrendous and we had to just take her home.

Father' I would say that was the cancellation of the operations was on par, as bad as emotionally for us as finding out, you know the problem that we had.

Mother' Because everyone's, you know, waved you off and then you arrive back and there and you unpack all the stuff and you know that you've still got to go through it and then it was unfortunate but there was it was cancelled and there was two weeks where he said that he was, the surgeon was filled up and then he was on holiday for two weeks. So it wasn't for another five weeks before we went in again and I think we went in on a Thursday, it was cancelled because there was emergency 'til the Friday. He said he would operate that wasn't his normal day and then that was cancelled, I think before an emergency, a baby came in and'

Father' Yeah it was a baby flown in.

Mother' Yeah a really poorly baby was flown in [Father' Hmm] and he said, 'I'm going to have to cancel again but I'll do it on Monday. Do you want to go home? And I said, 'Yeah, we'll go home.' And we went home for the weekend again with the bags, again. [Father' Yeah] And then we came back and I think it was cancelled one more time 'til the afternoon. I remember, oh, he came, the surgeon, she was last

One mother had found it very difficult to explain to their 3-year-old daughter that her operation had been cancelled when they received a phone call an hour before they were leaving the house.

Sometimes treatment plans change, which can be hard for parents. One couple were distressed when they were told that their daughter's first stage operation hadn't been successful and had to be repeated. Another mother was upset when a catheterisation planned for her child was cancelled.

Parents marital status' separated. Occupation' M-Nursery Manager, F-Recruitment Officer. Other children' one older child. The family do not live close by to a specialist hospital.

Then a few weeks went, a few weeks went, passed and we got a letter in saying that the specialist was going to come and meet us up in [our home town]. But there would be no catheterisation test done and I think I was really angry then because I had been told by the first doctor that this would be carried out next. This would be the next thing. But after, since found out that really the defect that [my daughter] had, it wasn't really any need for it.

But I think when somebody tells you something and you grasp on to that and you think, that's the next thing that's going to happen. So when we're told that wasn't going to happen, I was devastated really. Everybody kept on saying you really don't want to put her through that, but I wanted it done because I was scared that something was being missed out or you know, they wouldn't pick up on something and I was just so frightened that it if it wasn't done, I wouldn't get the full extent of what was wrong. So I think it, it took reassurance from speaking to the specialist that, you know, for her to say, 'No look there's no need for this test to be done'. But between getting the letter and seeing her it was quite a, time really because I really was, I was frantic really, 'cos I couldn't understand why they're now, they're were now saying no it doesn't need to be done.